Life With Food Allergies: How FPIES Made Me A Better Mom

May is Food Allergy and Celiac Disease Awareness month. I’ve been avoiding the topic because it just feels too big and all-consuming. This is something I deal with every single minute of every day as a mom to a toddler with FPIES, which in short, makes my son allergic to food. He’s just a few weeks shy of his second birthday and has exactly 17 foods he can safely consume.

Eating potatoes with Dad.

I mention his food allergies often on social media. I’ve written about it here and over on The Leaky Boob. I sometimes get lost in the specific restrictions and frustrations FPIES inflicts on our little family. I start to resent how profoundly our lives are marked by this disease.

But here’s the thing about being a parent to a remarkable kid with special challenges: it has made me a better mom, and on a larger scale, a better human.

I take nothing for granted.

After nearly losing my son to a stroke 36 hours after he was born, I am keenly aware that his presence on this earth is a gift. When his first foods made him vomit to shock, and he was restricted to only breastmilk and a little organic coconut oil for the first 12 months of his life, I wept with relief when he passed spinach at 13 months with flying colors. It never occurred to me to be thankful for every breath, every bite of food that passes my lips, but he reminds me. His breaths, his bites, his life all serve as a reminder to be grateful.

Every breath is a gift.

Empathy is a second skin.

I’ve always been fairly compassionate and empathetic, but having a son with chronic allergies has given me a sense of empathy I never knew existed. Any parent who has walked a rocky road with their kids can agree: You never look at a kid or family with special challenges the same way again. It’s no longer a detached empathy. It becomes personal to you, too.

I’ve become the anti-helicopter parent.

It’s counter-intuitive. My son is allergic to food. And guess what? Food is everywhere. Play dates, people’s houses, playgrounds, toddler music class, dog food dishes, restaurant high chairs and booster seats, trash cans, floors, walls, ceilings, shopping carts, faces, hands, mouths, toys…you can’t escape it. I have to be a helicopter parent in social situations, especially when other kids are present. He has so many restrictions, and when I have the opportunity to let my guard down in a food-safe place, I do. I let my son roam within my eyesight, climb and test his limits, and explore to his heart’s desire. I encourage him to play on his own and have age-appropriate adventures and only intervene when absolutely necessary. After seeing him suffer more in two years than many will suffer in a lifetime, the minor bumps, bruises, and messes don’t seem to bother my son, so I don’t let them bother me, either.

This kid loves the ocean, even when it’s 57 degrees.

I put up a fight.

Before becoming a parent, I often felt nervous expressing an opposing view point, or challenging authority. I feared losing friends (and even family) by becoming too opinionated or outspoken. Having a child with severe allergies makes it impossible to not offend people. I feel zero hesitation telling strangers not to touch or offer food to my son. I wipe my friends’ kids down with a wet paper towel before they play together. I speak often and loudly about respecting parents and their choices, allergies or not. I openly advocate for causes I believe in without apologizing, even when I know it will turn some people away. Most surprisingly, I don’t really care.

I question everything.

I call food companies and inquire about any hidden, unspecified ingredients. I inspect every space that has been deemed “safe” for my son. I question every test, procedure, medication, and diagnosis my son’s doctors try to administer, and generally annoy the crap out of them. And I have no problem educating doctors about the specifics of FPIES because most don’t know about the syndrome, and if they do, it typically isn’t much. It’s not their fault. FPIES is relatively unknown, and until this month, didn’t even have a medical diagnosis code. Considering I’ve spent the last 18 months immersed in research, and am an expert when it comes to my son, I don’t expect the doctors to have a firm grasp on his condition. I listen, I stay open, and I respect their training. Then I weigh the potential benefit and the potential harm and advocate for what is best for him.

My son with one of his favorite doctors.

I own my strength.

I pumped every single day for 21 months. I fought post partum depression and PTSD while figuring out my baby’s food allergies and dealing with insurance and doctors and mounting medical bills. I went on a Total Elimination Diet and stuck to it for a year in order to keep my milk safe and allow my son’s gut to heal, even though I dreamed about Eggs Benedict and wanted to submerge myself in a vat of guacamole. I had to be disciplined. My son’s life depended on it. I also fought to keep my marriage intact, even when the pressure of that first year nearly shattered us. Owning the hardship and vulnerable places allowed me to own my strength, too.

I crack jokes ALL THE TIME.

I feel my feelings, and I can get stuck in FeelingLand. Humor is one way for me to deal with the overwhelm. I have fully embraced my snark and wit and unladylike bathroom humor. Remember that quote “the only way out is through”? I choose to get through it with laughter and sarcasm. Because it doesn’t matter HOW you get through it, it just matters that you do.

Gratitude.

Empathy.

Trust.

Tenacity.

Curiosity.

Strength.

Humor.

These are the ways FPIES and my son have made me a better mom and human. I’ll take it.

About Carrie

Carrie Saum brings a passion for wellness and over a decade of experience in health care to her clients. A certified Ayurvedic Wellness Counselor (AWC) from the Kerala Ayurveda Academy, she empowers individuals and families to achieve health and balance through time-honored practices and health knowledge.

Comments

Amazing Momma! My son has severe food allergies. I can understand most of what you have taken the time to write. I too, am a helicopter mom! Much love to you and all you do for your beautiful child! Thank you for sharing!

Holy. Shit. I’ve been following you forever and had no idea you were dealing with FPIES too. You’re inspiring me to write about our journey. Maybe it will be therapeutic … My marriage didn’t survive it, but my son did! Hugs, mama. You rock 😉

Hi my niece is Amber she shared your message My heart goes out to her with her son and you for I am not a child but until a few years ago I did not have any idea why I vomited even driving I carried a bag until my doctor said he was burned out on me a new doctor coming on I could see her. After she came on board in two weeks she had me getting a pacemaker had cat scan on my shoulders, bones were dead so between surgeries she said try glutton free oh my life changed in 3 days I was a knew person. But my heart hurts so much knowing the pain these kids go through I can not imagine how hard it is, especially when they are so young and cannot say the reason I cry or I am all over the bed you can’t see my stomach hurts so bad and all the other symptoms Oh y goodness pain and so young. Amber has gone through it all her husband was thinking she was nuts until he tried a new disposable diaper he felt so bad when Aiden broke out, but it was an eye opener. Their older child had TA and babysitter knew Aiden’s problems said she didn’t give him anything fed her daughter cheese balls in the high chair Aiden was crawling sick that night now dad said Amber you can not work maybe never. When I think of my pain and know from my experience their pain and they know nothing else their whole lives. God dose not promise no problems but dose promise He will be their always and carry you but life dose not promise life easy no pain no troubles to me Amber an Shane have grown and sharing giving back amazing parents that is what I believe problems even the worse you can be grateful for what you learn and give back. It dose not stop the pain and when your child is in pain its so very hard we do not want them to suffer so you study look for answers everywhere and you learn from trial and area. My son asked me if he was dying I did not answer but later I said good by (its ok) and he went to my friend told her tell my mom (its ok) same words I said I know God is in haven and my son. So I know He is their to get us through. Thank you for being their for others. God Bless.

Hi! I’m Carrie.

Several years ago, I embarked on a journey to hold my life with empowered wellness. It started with community, both online and in real life. It breathed and it grew and it spilled over into my work, my marriage, my family, and brought forth a remarkable son with special challenges. It's not perfect, it's a little quirky and sometimes frayed around the edges, but I love this life. And I want to share it with you. More about Carrie

Our Stable Table does not intend to dispense medical advice and should not be considered medical advice or counsel. If you have a question about your health or the health of your child or loved one, please consult your physician. The stories and information here are anecdotal and of personal opinion only and should not be used as a substitute for medical help.